Fixing Frank

We have finally chosen which team will try to fix Frank (we’ve named her right arm…wouldn’t you?   We are just trying to keep it fun!).   

We are going to Cincinnati Children’s Hospital.   In exactly 4 weeks, on August 19, Ava will undergo an approximately 6 hour surgery by Dr. Yakuboff and Dr. Schwentker, along with a bunch of other helpers in the room.  Throughout the day, they will conduct intra-operative testing and those readings can sometimes affect the plan, but here is the simplified idea right now. 

1.   Use the spinal accessory nerve to gain back elbow flexion. 

 

People always ask, “How’s Ava?”. SHE IS HAPPY AND LOVING SUMMER!!! She is working through some therapy but otherwise is just doing a lot of normal 4-year-old things. She has been especially chatty today!

 
2.  Use part of her C5 (the 1 out of 5 nerves in her brachial plexus that escaped uninjured) to build back some shoulder function.  We are told that best case scenario would be that she could lift it 90 degrees.

3.  Take the entire C7 from her good side (left side) and aim for her hand and wrist.   It will be passed through her neck, between her trachea and spinal cord.   

4.   Save the intercostals, which are used with breathing.  The surgeons in Cincinnati like to keep them as an “ace in the hole”, and may perform another surgery in a few years.  It could be to provide sensation and feeling in a place that needs it, or be used as a source for connecting a free muscle transfer if the C7 doesn’t work like we hope. 

It was super tough to call Mayo and cancel that appointment.  We AGONIZED over the decision.  The team of surgeons there is absolutely top-notch, and well-respected among their peers. They publish lots of papers and lecture around the world, as well as see a huge volume of traumatic brachial plexus injuries.  Dr. Shin would always call us back in such a timely manner and fully answer all our questions.  However, we eventually just had to choose one place for Ava and here are some reasons we chose Cincinnati:

1.  The surgeons in Cincinnati have modified their version of a cross C7 and no longer does it the ‘old way’ like Mayo does.  The nerve pathway is a bit shorter, saving precious time, and also allows for the potential for finger extension — which would not have been possible the way that Mayo was grafting it.  It’s kinda complicated anyhow, and that’s the main gist of it. 

2.  We think it is wise to use the C5 to strengthen up the shoulder area.  We agree that what she has now may never be enough to be functional. 

3.   We think saving the intercostals is a wise move. Doing the C7 has the potential to stun the phrenic nerve and that is super-important for her diaphragm and breathing, so it is playing it safe, as the intercostals are also important with respiratory functions.  Also, it gives one more chance down the road for what would likely be a sensation add-in. 

4.  Cincinnati has been extremely easy to work with.  I honestly think that the scheduling lady, the therapists, and the surgeons all share a desk.  They work seamlessly and have been a huge resource of information for us as we work with Ava at home.  For instance, they have an occupational therapist who spends hours and hours a week on the phone helping other therapists help their patients, since most have never worked with these specific injuries. 

I have been trying to free myself from any worry and simply commit her to the care of the Lord. It certainly has been a time of grieving.  I don’t know how to explain how one can grieve the loss of an arm….but maybe it is more like the grieving is because of a loss of a normal childhood.

Today, Ava had professional pictures taken.  I really wanted to have some scar-free pictures for her to cherish. She loved the attention from the photographer, as well as having her arm out of the sling.  Our summer days are just flying by, and today was no exception. 

Lastly, Joe and I waited patiently, hoping for that ‘sure sign’ to help us decide.  Do you know what I mean?   This surgeon does mission work, or that surgeon has poor reviews or something like that.   We would often sway to whichever team it was that we had talked with most recently.   At this point, though, we are relieved to have made a decision and simply pray for a peace that passes understanding regardless of the outcome of the surgery. 

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All about Ava’s Arm

Here are some of the details of Ava right now, 2 months after having 4 of the 5 nerve roots that provide motor function and sensation to her arm completely avulsed (pulled out of spinal cord).

She is completely comfortable.  Doctors think perhaps her nerve pathways weren’t developed like an adult’s might be, so she has none of the crushing, burning sensation that often accompanies injuries like this.  A HUGE answer to prayer for us.

The one nerve that is still intact (her C5, which means it comes from the space next to her 5th vertebrate) is one that primarily feeds to her shoulder.  In the last month, Ava is able to do a bit of shoulder abduction, which I think I would best describe as similar to making a snow angel.  When standing, Ava’s arm used to just hang absolutely limp, but now she is able to lift it about 15 degrees out from her thigh.  Nothing functional for sure, but a good sign that the C5 is working and one less piece to try to fix.

 Ava’s morning routine is this…I take off a brace that is actually supposed to be used to immobilize a shoulder, along with a hard plastic splint that goes from the middle of her forearm past the tips of her fingers.  Then, we do range of motion exercises for 10 minutes.  I am trying to make sure her arm is still able to move if her surgery is successful. Then, I give the space between her fingers a dusting of antifungal powder to keep them from getting so sweaty.  I put Mederma, an anti-scarring OTC, on her two sites with stitches.  Then I put some essential oils on her that might be good for nerve repair because I am an optimist and figure it is worth a shot.

Then, I help her get dressed and put a sling on her that was designed by a man who had a severe brachial plexus injury many years ago before surgeries were ever successful, and he needed something to wear when he trains for triathlons.  I really like the sling and finally received a neoprene splint (Benik BD88) for her wrist  and thumb, so now we add that too.

 

Her latest adaptation: rolling a piece of paper so she can hold it between her knees. Then, she uses a scissors to make pieces of confetti. Her absolute favorite thing to do before her accident was cut paper, so I am glad she is enjoying it again.

At night, it’s the same routine with switching back to the other brace.  I sometimes would let her be without the brace for a bit after her shower but lately she has been into spinning in circles and dancing so now I get her in her brace quickly again.  It is important to protect her from breaking or overextending her wrist and also, to not have so much much weight pulling her shoulder out of its socket.

I may have been misleading in a previous post, which I realized after some face-to-face conversations.  Ava has absolutely NO hand function right now. Her entire arm hangs at the side and her sensation stops at about her bicep.


Ava goes to therapy right here in Worthington 3 times a week.   Usually, the physical therapist tapes her shoulder to prevent subluxation as much as possible, to keep her shoulder up and back.  We will probably start doing some electrical stimulation soon to help her develop her shoulder abduction.  Ava also does occupational therapy to develop her good hand.  Once a week, we also throw in a speech therapy session and let me tell you 3 therapy sessions in a row with a 4-year-old girl while caring for her baby sister Violet can get quite exhausting.  I am just so thankful that we have these services in our hometown.

We gave a tour of our dairy yesterday. I think it is importamt for us to continue to do normal things as much as possible. You would totally want to be a part of Dina Lubben’s daycare/Little Bits academy if you were a kid. She contacted me through this blog for a tour…these kids go on multiple field-trips per week in her bus!

We will do a surgery in August.  We are still undecided between Mayo and Cincinnati but will choose soon.  I scheduled a surgery at both so our spot is held.

Waiting, waiting, waiting is such a trial in this life.  We could all use more patience.  This surgery is ideally performed between 3-6 months and that is probably just too much time to give parents to weigh the decision, research and compare surgical plans.  We certainly aren’t taking this decision lightly.